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Sunday, August 23, 2009

Anatomy of a Beach Visit

We have been getting Ellie to the beach a lot this summer. Not "a lot" as in when I was a kid and would walk down to the beach on my own, every day. But a lot for a kid with issues like Ellie and for working parents like us. ;-)

I have been very determined that this summer Ellie was going to have lots of Ellie specific fun because last summer we were in the house for most of it with our crashedcar and Dave's injured finger and the summer before that with my knee surgery gone supersonic. So this summer was going to be different. And it has been.

We have recently discovered Wingaersheek Beach. It's lovely. It's windy. It yielded up this story. We also go to Nantasket Beach which has great ramps and the sand is hard packed which makes it easy to roll Ellie across it in her stroller.

I was with one of our PCA's, Liz, in fact I call her "Power House" as a nickname because of her endless energy and drive to make sure Ellie has a full experience whenever she is helping us out. We are blessed to know her. I learned about Wingaersheek from Kate, who is my expert on accessibility in the area and she told me about the beach wheelchair. Thanks for that Kate! We finally got there and we love it. It is not free or cheap...but worth it!

When Liz and I were hanging outside the tent while Ellie was napping in it another mother came up to me. She was very tan and petite. She was with her husband and children and some extended family members. She asked me about Ellie's tent. I raved about it's awesomeness, because it is awesome, the best money I have ever sent. Then she proceeded to tell me that she also has an eleven year old daughter who was not with them and that they do not take her to the beach anymore because it's too hard because she is too heavy.

That made me very sad for the eleven year old daughter and her family. The mother
admittedly was a very petite woman, her husband was not, her other children looked very fit teenagers as well. I marveled at this. I realized in speaking with her that the beach is a huge hurtle to overcome with a child that can't walk and may be g-tube fed, need to be toileted, and have other serious medical issues. I am writing this post to tell you how we do it because there are a lot of things we have figured out that are worth sharing. There are also some beaches with "hidden" resources for the special needs beach goer.

1. It takes 2 people. There is no getting around this. There is just too much stuff to schlep. But that does not mean the second person can't be a preteen and up child who can stay with your special needs child while you make a run to the car with half the stuff. But we have not figured out a way to do this with only one person.

2. A pop up tent is essential. I got mine here for about $70. It has lasted us 3 years now and is awesome. It's huge. You can fit 2 beach chairs in it. Here are all the things we use it for that allow us to have a great beach experience:

a. Ellie takes her nap in it so we get to stay for the whole day versus just a couple of hours. When you read about how much we schlep, you will appreciate this. Also, and more importantly, many medically involved children fatigue easily and this can set off seizures and lower their immunity, etc. They need their rest. We bring a couple of fleece blankets with us and towels that we put underneath her so she can rest during a day at the beach.

b. We change her diaper there. This allows for privacy, cleanliness, and means we don't need to locate close to any smelly, noisy facilities.

c. We change her into her swim diaper and bathing suit when we get there and between swims and into nice dry soft clothes at the end of the day.

d. We deal with her g-tube dressing and g-tube boluses (meals) there - because we can limit the amount of sand and are protected from wind

e. We protect her from the sun. She has the most beautiful rose petal skin and does not change position as much as a typical kid will so having portable shade is critical.

The tent has made all things possible. Ellie certainly does not spend all her time in the tent but it is there when we have to attend to her medical life, need privacy and shelter from the elements. She loves it too as do all the other kids around. It's just plain fun and way, way EASY to assemble and dissassemble. It takes literally less than 5 minutes to set up and maybe 7 minutes to take down.

3.Accessibility. We have had success thus far with using her Rodeo chair and her old 3 wheeler jogging stroller which is now to small. However, it's really important to note, that Wingaersheek, and possibly other beaches have a beach wheelchair. We didn't ask for it last time we were there and I was planning to ask for it the next time but I am not sure we will get there again this summer. I wanted to take pictures of it for this post. However, a beach wheelchair, is usually big enough for an adult and can be rolled out into the water. Rolling out into the water is very important when at many beaches the tide is out and the water is up to your ankles for miles out. We were planning to either one of use ride in it holding Ellie, probably me - being lighter than Dave, or packing it with towels... If we get up there again I will take pictures. It's important to note that another mother told me that they actually used one with their child via the pack em in there with towels route but that the thing floated when it hit water because their kid was so light. Either way it get's your non-walking child to the water without you having to bear all their weight yourself. At Wingaersheek you have to ask - so ask where you are. Call the town and see if they have considered purchasing such a thing. A fund raiser at your local community club would be money well raised spent on a chair that allowed people who can't walk experience the beach!

4. Duoderm. We use this to completely cover her g-tube. We put it right over the dressing with a small slit right over where her Mic-Key button is. Then we put another small patch over the slit. This protects her g-tube site and belly from sand. That said the last two times we took Ellie to the beach we did not do this and all was well. Maybe she is big enough to handle tiny grains of sand that might get in her belly. However, we change her dressing after each swim and I have not seen much sand there at all. But if you are worried about it, as we were, Duoderm rocks. It's easy on the skin and totally keeps out the sand.

5. First Years Reclining Booster Seat. I learned about this seat from Billie, who is truly the master of figuring out positioning equipment. This seat cost me $24 at Target. They sell them at Baby's R Us too I believe and definitely on Amazon. Again money well, well spent. We take the liner off - which is simple - and bring it to the beach and place it at the water's edge so Ellie can play there and by the tent so she can play in the soft sand and in the tent if she wants to play there. We use it as well at restaurants and dissassemble it and put it in our cases when we travel. I will be very sad when she grows out of it. I think it goes up to 50 pounds so we have a ways to go.

6. Life jacket. There is a special needs life jacket that the kids at Ellie's school use that costs roughly $300. We don't have one. We need one. But for now I got Ellie a bathing suit at our local sports store that has blow up floats that go right into the suite around the belly and back. These help tremendously with holding her in the water. It is the suit she is wearing in the pics, though the blow up bits aren't in it then. They are easy to put in though and don't cause her any discomfort because they have some give and are not hard like some I have seen.

7. Cooler. We bring a cooler with our food and Ellie's food and water and meds.

8. Camera to capture all the fun you are going to have.

9. Book. We actually get to chill when Ellie takes her nap. That is an amazing thing.

10. Molded Ear Plug. Vicki, the amazing audiologist at Ellie's school made her a customized ear plug for her left year because Ellie has a tube in that ear. You don't want water in an ear with a tube.

To be honest, with my recent back issues, I am and always have been worried about what I will do when Ellie get's heavier than I can handle. The fighter in me just thinks I will hire some bigger person to hang out with us and help me lift her. I have no doubt I will figure it out. I have a lot of other blogging Mamas who have gone ahead of me on this one.

I truly never want to be in the position of going to the beach without my little mermaid girl who absolutely loves the ocean. She is so relaxed there and happy and content and absolutely loves the feeling of being in the water. So far she knows how to float and kick off things. She is all smiles and laughs. I love the ocean myself and I especially love sharing it with Ellie.

Wednesday, August 12, 2009


My blog has it.

It's not pretty and is making my blog anemic!

Catching up here and inspired by Julie & Julia to give my poor blog more attention. This record of this journey is, after all, something that is more useful to me and more sustainable and relevant than the constant and fleeting banter of Face book.

Ellie is going to be 100% off the Depakote in two weeks. After all the difficulty in trying for months to get into see her Neurologist, as some of you read, I decided to wean her myself. And to do so very slowly. I finally got Ellie into see the Neurologist a couple of weeks ago and he said, "Well if you wanted to wean her you should have told me." I replied, "I tried to tell you and in fact left several messages for you including a faxed letter to that effect." To which he replied saying nothing but taking notes into his computer. He then laid out a plan to get Ellie off the two remaining capsules she was on from the total of 6.

This week she is on a half cap in the morning and a whole cap at night for this week, next week it will be a half and a half, and then the week after only a half cap at night and then the week after he said a half cap every other night and then that's it....

What a difference though. My baby girl is more interested in tasting food, she is brighter, she is more interested in the world outside herself.

I can't wait until she is off it totally and a few months have gone by. I feel strongly her seizures were caused by the cisipride and there has been no sign of any of that activity throughout this process. I am hopeful. I am glad she seems to be feeling better.

My back: I started back boot camp at New England Baptist hospital this week. I am glad. It's good and covers your whole back. They said they usually set a goal for women to lift 40 pounds but my goal is 50. I figure that should cover me for a couple of years with Ellie. My pain level is greatly decreased as the toxic fluid from the disc that leaked out into my body has been absorbed. I have not lifted Ellie off the floor yet but plan to after I get a few weeks of the strengthening from the back boot camp. It's good to learn these muscle building exercises - mostly weight lifting. Like the PT for my knee, I will do them for life. Silver linings.

There's so much more to write about, but I am very sleep deprived at the moment as we had a rough weekend with Ellie putting in a couple of days and one night in the hospital. She is fine now. She got a tummy bug coming home on the plane from Ireland. They thought it was her ventricles... of course. Over eager interns are scary, not all cute and witty like on Gray's Anatomy - just plain scary. Like I said, more to write about.

But we were up till 4am that night, Sunday. And she just called out now and I was up with her three times last night and then had to get up early. Between jet lag and tummy bugs and hospital stays and trying to balance my job and my back recovery as well as all the household stuff I am pretty flat out.

It's one of those times when you have to laugh and take stock like one of my friends does by asking at the end of the day, "Is everyone still breathing? Yes? Well then, it was a good day."